Life is a real challenge. My husband has two jobs – one daytime, one in the evening - and I am Reuben’s carer. With four children, I feel pulled in all directions. When one child needs 80 per cent of your time it impacts hugely on the other children. Cancelled trips, no holidays, missed school sports days and concerts, endless medical emergencies – it all takes its toll on family life.
The respite time I get from Julia’s House is nothing short of a miracle for me because it gives me a few precious hours to spend with Khalid, Nikita and Aaron and that’s so important because life is tough for them.
On many occasions the children have woken up to find I’m not there – I’ve had to take Reuben to hospital in the night. Khalid suffers from incredible guilt because of the jealously he feels about my time with Reuben.
He once had to resuscitate his brother because Reuben stopped breathing while I was driving him to the hospital. It was terrifying. Khalid is all too aware of how urgent and desperate things can get.
Khalid, Nikita and Aaron worry constantly about their brother and can get incredibly anxious when he is ill. They have overheard conversations and witnessed situations which no child should have to face.
They also put up with jibes and awkward questions about their brother whenever we all go out together. It makes them feel different, set apart from other children, which is incredibly isolating. They can’t have friends to visit and I haven’t time to take them anywhere.
Julia’s House sibling service is an absolute Godsend. They come alive when they have been on a day out, they are so happy and chatty. It’s the chance for them to make real and lasting friendships away from the burden of caring for Reuben.
They love Reuben to bits, but it is a relief for them to go out without him, to feel like normal children, not having to talk about their situation, not having the stares and the hurtful comments.
The respite we receive from Julia’s House is fantastic, but I can honestly say it is the sibling service which I treasure most because it is giving my children the chance to experience a normal childhood when life for them is about as far from normal as it gets. I’d be lost without it.
About Julia's House Sibling Service